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Lupus’ Disproportionate Impact on Women of Color Must Be Known

By Steven Owens, MD, MPH, MA

May is Lupus Awareness Month and on May 20th specifically, health advocates and those directly or indirectly impacted by the disease called lupus will Put On Purple to raise awareness and to support the millions of people who are affected by the disease. For far too long, many Americans have remained unaware that more than 1.5 million people, mostly women, are affected by lupus, and that it is the leading cause of kidney disease, stroke, and heart disease.

How many people know that women of color are two to three times more likely to develop lupus than Caucasian women? Sadly, many in the communities most affected, and even those within the medical community, are far less educated about the signs and symptoms of lupus than other equally and less threatening medical conditions.

Lupus has been called “a mystery disease” by researchers and physicians. It is a chronic, autoimmune disease with no cure that can damage any part of the body, including skin, joints and organs. It can even lead to death. It can take up to six years to diagnose if the medical provider is not familiar with its symptoms. There is no cure for lupus but there is hope! With early detection, managed care, reducing stress, and following a healthy diet and exercise plan, individuals with lupus, especially women, can strive for optimal health.

The Directors of Health Promotion and Education (DHPE), along with other national and community-based organizations, is leading a campaign to increase awareness of the signs and symptoms of lupus, to improve rates of early detection and early treatment so that patients with this condition have a better chance of living long, healthier lives.

The campaign targets women of color who are at an increased risk for lupus and focuses on educating public health professionals and primary care providers of the signs and symptoms of lupus as well. Individuals experiencing the following symptoms should discuss the possibility of lupus with their health care provider:

  • Achy, Painful or Swollen Joints;
  • Extreme Fatigue or Weakness;
  • Sudden, Unexplained Hair Loss;
  • Photosensitivity or Sensitivity to Sunlight;
  • Chest Pains; and
  • Anemia.

This May, DHPE and other partner organizations want to be sure that lupus doesn’t take the back seat but rather gets just as much attention as other chronic medical conditions that disproportionately affect women and minority populations.

In the same way that we support awareness and the funding of research for other diseases that devastate families, we need many more community leaders, health care institutions, health educators and medical professionals to rally around this effort to raise funds and support lupus awareness activities. Secondly, there is a need for increased participation in clinical trials from within the African American, Hispanic/Latina, Asian and Native American communities so that we can better understand this disease and more effectively diagnose and develop treatment plans.

Especially in minority communities, it is well known that women are usually the backbone and the glue that keep their families together. So, there is even more at stake if we don’t bring lupus to the forefront of community health advocacy. We must all play our part to increase funding and education about lupus, early diagnosis and treatment, and participation in lupus research in support of the people we love.

DHPE calls on women of color and health practitioners to join us on Put on Purple Day on Friday, May 20th, to raise awareness about lupus and in particular how women of color are disproportionately impacted by this disease. Encourage your organization, friends and loved ones to wear purple, in unity with and support of, those living with lupus.

Grab your camera, phone, or tablet and share your own “This is Why I Put On Purple” story with a photo! Be sure to share your organization’s Put on Purple participation on social media and use the hashtags: #dhpePOP and #dhpelupus. Whether you are living with lupus, caring for patients, researching a cure or know someone with the disease, it touches everyone. Join DHPE and the lupus community and learn the signs and symptoms of lupus today!

DHPE, a national public health association, was recently funded by the Office of Minority Health, US Department of Health and Human Services, to implement a national lupus health education program. To learn more about lupus, visit www.lupus.org. For more information on the DHPE LEAP Program, visit www.bit.ly/dhpelupus or email LEAP Program Manager Thometta Cozart, MS, MPH at info@dhpe.org.
Steven Owens, MD, MPH, MA is director of Health Equity, Directors of Health Promotion & Education.

Metrolink to begin 91/Perris Valley Line service June 6

Metrolink and Riverside County Transportation Commission officials recently announced service along the 91/Perris Valley Line (91/PVL) will begin Monday, June 6. The 91/PVL is the first extension of Metrolink service since the Antelope Valley Line was built in 1994.

 “We are very excited the residents of the Perris Valley will soon be able to board Metrolink stations in their community and reach areas through Southern California,” said Metrolink Board Vice-Chair Daryl Busch, who is also the mayor of the City of Perris and a member of the Riverside County Transportation Commission. “Metrolink and RCTC staff has worked incredibly hard to make this concept a reality.”

The extension of the 91 Line will serve four additional Riverside County stations: Riverside-Hunter Park/UCR, Moreno Valley/March Field, Perris-Downtown and Perris-South.

Weekday 91/PVL trains 701, 703 and 705 will all originate at the Perris-South Station with service beginning at 4:37 a.m. In the evening, trains 702, 704 and 706 will all return to Perris with the last train reaching its final destination at 7:50 p.m. There will also be three round trips each weekday between Perris and the Riverside-Downtown Station. There will be no weekend service to or from the four new stations.

The 24-mile 91/PVL extension enhanced 15 at-grade crossings in Riverside County.  The variety of safety measures includes: flashing warning devices, gates, raised center medians, striping and pavement markings. The project also added pedestrian crosswalks at two railroad crossings and permanently closed two others.

To increase awareness of the dangers of crossing railroad tracks, a continuing public outreach program, “See Tracks? Think Train,” was launched in 2014 to select Riverside County schools, neighborhoods and community groups. Also, an extensive outreach campaign with the University of California, Riverside is ongoing.

For more information about Metrolink and the new service, please visit www.metrolinktrains.com/pvl.

Andre Mack and Mouton Noir: The wine world’s black sheep

By Eric Easter, Urban News Service

In a third-floor loft a few blocks from Madison Square Garden, the wine merchants at Banville & Jones are deciding which wines New Yorkers will drink. Andre Mack has been selling his Mouton Noir wine through these distributors for 10 years, but today they make him wait.

From 10 a.m. to 5 p.m. every day, Banville & Jones’ staffers swirl, sip and spit around a conference table as global winemakers pitch new vintages and hope that these experts will push their wares just a little harder.

First this morning is an Italian maker, with a new portfolio of Barolo and Chianti. Then a French maker, who runs way overtime. Next up is Mack.

He sets out his bottles and begins to spin the tales of his own collection of “garage wines.” The “Bottoms Up” white blend (75 percent riesling, 8 percent viognier and the rest pinot blanc) has opening notes of diesel and kerosene with floral tones. “It’s light, easy, not too angular,” Mack says.

Then comes the Oregogne pinot noir (“My workhorse”). Mack details the source of the barrels and the location of the vineyard used for his 2013, and how he has the grapes picked early to yield less sugar.

Mack ends with “Horseshoes and Hand Grenades,” a syrah/cab/merlot blend that “Shows my creativity as a winemaker,” he says.

Mack’s stories compose his narrative. He gets lots of press for being one of the few blacks in the industry. But that’s not just marketing. He is a craftsman.

How important are Mack’s stories to selling his wine?

“Hugely important,” says Vincenzo Guglietta, Banville & Jones’ sales manager. “Andre tells a compelling story. Let’s face it, there are a whole lot of wines out there. Without a story, it’s just juice.”

For the rest of the day, and the next several weeks, Mack tells his story again and again — at a food-industry incubator that afternoon, at that evening’s launch of eBay Wine — a new website that Mack is curating — a TV show taping at his house that weekend, then tastings in Boston, dinners in Milwaukee, more distributors in Kentucky, and then a few days in Texas.

It’s a grueling schedule, but as Mack sees it, more fuel for the wine’s story. “At some point, Robert Mondavi was walking from store to store carrying bottles in a bag, too.”

Mack has no paid assistants, no sales staff. The wines are about a singular taste, a singular vision. So much so that Mack also designs the stark, black-and-white labels that vie for attention in a market where many drinkers judge wines by their covers. “I wasn’t able to convey what I wanted to other designers,” Mack says, “so I taught myself.”

“For now, it’s just me,” Mack says. “I’m the best person to tell my story and the story of the wine. So far, it’s working.”

And it’s a good story. Wine steward at The Palm in San Antonio. Winner of the Best Young Sommelier competition and the first African-American to do so. Recruited by chef Thomas Keller to head the wine program at Manhattan’s four-star Per Se, where wines can climb to $24,000 a bottle. Then a calling to strike out on his own, a risky move from a safe gig, self-training, self-doubt, mistakes.

In just under 12 years, Mouton Noir (French for “Black Sheep”) has grown from 36 cases shipped in its first year to more than 33,000 cases in 2016. That puts Mouton Noir at the very high end of the small-winery business, a category in which most wineries sell fewer than 2,000 cases per year.

Mack also sells a lifestyle, a concept of fun and approachability backed by disarming quality. “I’m trying to create something that is not just a wine company, but an experience. Something you can remember after the wine is finished.”

A husband and father of three boys, Mack says what he’s really doing — the hard work, the tough schedule, the constant hustle — is building a family business. “My children taste my wine. I want them to know what I do and where it comes from. They travel with me to the vineyards, touch the grapes, walk the farms. That’s what it’s all about.

“This is what I want to be remembered for. This is my legacy.”